Handbook on Nutrition

Handbook for Children with Special Food

and Nutrition Needs

National Food Service Management Institute The University of Mississippi

Item Number ET69-06

2006

ii

This project has been funded at least in part with Federal funds from the U.S. Department of Agriculture, Food and Nutrition Service through an agreement with the National Food Service Management Institute at The University of Mississippi. The contents of this publication do not necessarily reflect the views or policies of the U.S. Department of Agriculture, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. government. The University of Mississippi is an EEO/TitleVI/Title IX/Section 504/ADA/ADEA Employer. © 2006, National Food Service Management Institute, The University of Mississippi Except as provided below, you may freely use the text and information contained in this document for non-profit or educational use providing the following credit is included: Suggested Reference Citation:

National Food Service Management Institute. (2006). Handbook for Children with Special Food and Nutrition Needs. University, MS: Author.

The photographs and images in this document may be owned by third parties and used by the University of Mississippi under a licensing agreement. The University cannot, therefore, grant permission to use these images. For more information, please contact [email protected].

Disclaimer The information provided in this publication is the result of independent research produced by NFSMI and is not necessarily in accordance with U.S. Department of Agriculture Food and Nutrition Service (FNS) policy. FNS is the federal agency responsible for all federal domestic child nutrition programs including the National School Lunch Program, the Child and Adult Care Food Program, and the Summer Food Service Program. Individuals are encouraged to contact their local child nutrition program sponsor and/or their Child Nutrition State Agency should there appear to be a conflict with the information contained herein, and any State or Federal policy that governs the associated child nutrition program. For more information on the Federal child nutrition programs please visit www.fns.usda.gov/cnd .

NFSMI

iii

National Food Service Management Institute The University of Mississippi

Building the Future Through Child Nutrition The National Food Service Management Institute (NFSMI) was authorized by Congress in 1989 and established in 1990 at The University of Mississippi in Oxford. The Institute operates under a grant agreement with the United States Department of Agriculture, Food and Nutrition Service. PURPOSE The purpose of NFSMI is to improve the operation of Child Nutrition Programs through research, education and training, and information dissemination. The Administrative Offices and Divisions of Technology Transfer and Education and Training are located in Oxford. The Division of Applied Research is located at The University of Southern Mississippi in Hattiesburg. MISSION The mission of the NFSMI is to provide information and services that promote the continuous improvement of Child Nutrition Programs. VISION The vision of the NFSMI is to be the leader in providing education, research, and resources to promote excellence in Child Nutrition Programs.

CONTACT INFORMATION Headquarters

The University of Mississippi Phone: 800-321-3054 Fax: 800-321-3061

www.nfsmi.org

Education and Training Division

Technology Transfer Division The University of Mississippi

6 Jeanette Phillips Drive P.O. Drawer 188

University, MS 38677-0188

Applied Research Division

The University of Southern Mississippi 118 College Drive #10077

Hattiesburg, MS 39406-0001 Phone: 601-266-5773 Fax: 888-262-9631

Acknowledgments

iv

Acknowledgments

WRITTEN AND DEVELOPED BY

Harriet H. Cloud, MS, RD, FADA Owner, Nutrition Matters

Professor Emeritus, Department of Nutrition Sciences

University of Alabama Birmingham, AL

Anne Bomba, PhD, Associate Professor Teresa Carithers, PhD, RD, LD, Associate Professor and Chair Diane Tidwell, PhD, RD, LD,

Associate Professor Department of Family and Consumer Sciences

The University of Mississippi Oxford, MS

GRAPHIC DESIGN BY

Vicki Howe National Food Service Management Institute

TASK FORCE MEMBERS Sincere appreciation is expressed to the following people who

contributed their time and expertise to plan and review these materials.

Diana Cunningham, RD, LD Chief Clinical Dietitian

North Mississippi Regional Center Oxford, MS

Linda B. Godfrey, MS, RD, SFNS, LD

Child Nutrition Program Director, Retired School Nutrition Consultant and Trainer

Vestavia Hills, AL

Darlene Hoar, MS, RD, LD Director, Project RUN Early

Intervention Program North Mississippi Regional Center

Oxford, MS

Beth King, PhD Director of Technology Transfer, Retired

National Food Service Management Institute

Virginia Webb, MS, RD

Director of Education and Training National Food Service Management Institute

NFSMI PROJECT COORDINATOR Ensley Howell, MS, RD, LD

NFSMI EXECUTIVE DIRECTOR Charlotte B. Oakley, PhD, RD, FADA

Table of Contents

v

Table of Contents

Introduction............................................................................................................................... 3

Regulations and School Food Service ...................................................................................... 7

Disabilities Defined .............................................................................................................. 7 Individuals with Disabilities Education Act (IDEA)............................................................ 8 Diet Prescription ................................................................................................................... 9 The Role of School Food Service ....................................................................................... 10

Description of Selected Disabilities........................................................................................ 15

Autism................................................................................................................................. 15 Cerebral Palsy ..................................................................................................................... 16 Epilepsy or Seizure Disorder .............................................................................................. 17 Muscular Dystrophy ........................................................................................................... 18 Mental Retardation ............................................................................................................. 18

Down Syndrome ............................................................................................................. 18 Prader Willi (PW) Syndrome.......................................................................................... 19

Spina Bifida ........................................................................................................................ 20 Cystic Fibrosis .................................................................................................................... 21 Rett Syndrome .................................................................................................................... 22 Metabolic Diseases ............................................................................................................. 26

Diabetes .......................................................................................................................... 26 Inborn Errors of Metabolism (IEM) ............................................................................... 27

One Diet Does Not Fit All .......................................................................................... 29 Diets May Need Adjustments ..................................................................................... 29 Need for Consultants .................................................................................................. 29 How To Handle Mistakes ........................................................................................... 31

Food Allergies and Food Sensitivities .................................................................................... 35

Common Food Allergens.................................................................................................... 35 Foods that commonly contain the “Big Eight” allergens and should be avoided............... 35 Symptoms of Food Allergy ................................................................................................ 36

Gastrointestinal symptoms associated with food allergy................................................ 37 Cutaneous, or skin, symptoms associated with food allergy .......................................... 37 Respiratory symptoms associated with food allergy ...................................................... 37

Anaphylaxis ........................................................................................................................ 37 Managing Food Allergies in Children ................................................................................ 38 Monitoring for an allergic reaction..................................................................................... 39 Food Intolerance ................................................................................................................. 40 Celiac Disease..................................................................................................................... 41 Treatment Strategies ........................................................................................................... 41

Table of Contents

vi

Issues Impacting Nutrition and Special Dietary Orders ......................................................... 45

Energy Needs...................................................................................................................... 45 Overweight...................................................................................................................... 45 Underweight ................................................................................................................... 47

Feeding Problems ............................................................................................................... 48 Oral-Motor Problems.......................................................................................................... 49 Modification of Food Texture............................................................................................. 50 Positioning Problems .......................................................................................................... 50 Behavioral Issues ................................................................................................................ 51 Self-feeding......................................................................................................................... 51 Tube Feedings..................................................................................................................... 52

Special Formulas and Special Medical Foods ........................................................................ 55

The Purchase of Special Formulas and Special Medical Foods ......................................... 55 Fluids and Fiber .................................................................................................................. 56

Intervention Strategies and the Team Approach..................................................................... 61

Environmental Considerations................................................................................................ 65

Dining Environment ........................................................................................................... 65 Scheduling .......................................................................................................................... 65 Space................................................................................................................................... 65 Location .............................................................................................................................. 66 Lighting............................................................................................................................... 66 Dealing with Distractibility ................................................................................................ 66

Food Safety Issues .................................................................................................................. 69

Glossary .................................................................................................................................. 73

Reference List ......................................................................................................................... 77

Resources ................................................................................................................................ 85

Appendices.............................................................................................................................. 87

Appendix 1: Diet Prescription for Meals at School........................................................... 89 Appendix 2: Foods to Avoid when Casein is omitted ....................................................... 90 Appendix 3: Gluten Free Foods by Food Groups.............................................................. 91 Appendix 4: The National Dysphagia Diet (NDD) ........................................................... 93

Introduction

Handbook for Children with Special Food and Nutrition Needs

National Food Service Management Institute 3

Introduction

An amazing number of children with developmental disabilities and special health

care needs are entering pre-schools, elementary schools, and high schools every year. It is

estimated that 17% of children less than 18 years of age have some type of developmental

disability. Other surveys report that 3-4 million Americans have a developmental disability

and another 3 million have milder forms of cognitive disorders or mental retardation

(American Dietetic Association, 2004). Congress first addressed this concern in the

Rehabilitation Act of 1973. Since 1975 these children have been served in the public school

system under the Education of the Handicapped Act later called the Individuals with

Disabilities Education Act (IDEA). IDEA requires that a free and appropriate public

education be provided for children with disabilities, ages 3 through 21. A third act,

Americans with Disabilities Act, was passed providing a comprehensive law, which

broadens and extends civil rights protections for Americans with disabilities. Many of the

children and adolescents served under this law have health problems that require nutrition

intervention and benefit greatly by modification of the school breakfast and lunch.

The purpose of this handbook is to

1. identify the developmental disabilities and other health care needs to be served by school food service, and

2. provide information related to the type of intervention indicated.

The handbook will also include a discussion of the regulations requiring the school’s

participation and training needs of the food service workers. This manual should not be

considered “all inclusive” but it will address many conditions most frequently encountered in


4 National Food Service Management Institute

the school environment. Additional resources are given for investigating conditions that may

not be presented.

Regulations and

School Food Service



Regulations and School Food Service

When the Rehabilitation Act of 1973 was passed and children with developmental

disabilities began entering school, the use of the school food service program by these

children presented a number of questions and challenges. School personnel were concerned

with how much it would cost, how menus would be written to prepare dietary modifications,

and how to accommodate the needs of individual children.

Today three federal legislative acts mandate that school food service will serve

children with special dietary needs. These are the Rehabilitation Act of 1973, Individuals

with Disabilities Education Act (IDEA), and the Americans with Disabilities Act (ADA). In

addition, the USDA came forth with nondiscrimination regulations (7CFR 15 b) as well as

regulations which govern the National School Lunch Program and School Breakfast

Program. These regulations make it clear that substitutions to the regular meal must be made

for children unable to eat school meals because of their disabilities when a licensed physician

certifies the need. Guidance for schools is based on USDA Food and Nutrition Service

Instruction 783-2, Revision 2, Meal Substitutions for Medical or Other Dietary Reasons.

Disabilities Defined

A person with a disability is a person who has a physical or mental impairment,

which substantially limits one or more of the major life activities, has a record of such

impairment, or is regarded as having such as impairment (USDA Food and Nutrition Service,

2001).

Diseases or conditions, which cause physical or mental impairment, include the following:

• Orthopedic, visual, speech, and hearing impairments



• Cerebral palsy • Epilepsy • Muscular dystrophy • Multiple sclerosis • Cancer • Heart disease • Metabolic diseases (such as diabetes or inborn errors of metabolism) • Severe food allergy • Mental retardation • Emotional illness • Drug addiction and alcoholism • Specific learning disabilities • HIV disease • Tuberculosis

There are additional conditions not listed such as spina bifida and Prader-Willi

syndrome since they limit one or more major life activities.

Individuals with Disabilities Education Act (IDEA)

IDEA recognizes the following disability categories that establish a child’s need for

special education and related services. This is included in Part B of the Act. IDEA includes

the following as meeting the term disability:

• Autism • Deaf-blindness • Deafness or other hearing impairments • Mental retardation • Orthopedic impairments • Other health impairments due to chronic or acute health problems such as

asthma, diabetes, nephritis, sickle cell anemia, heart condition, epilepsy, rheumatic fever, hemophilia, leukemia, and lead poisoning

• Emotional disturbance • Specific learning disabilities • Traumatic brain injury • Speech or language impairment • Visual impairment • Multiple disabilities



Attention deficit disorder (ADD) or attention deficit hyperactivity (ADHD) may be

included in one of the above categories, as will many other disorders. Under IDEA, an

Individualized Education Program (IEP) is required and must include problems and goals

that should include a nutritional problem, if one exists. Some states supplement the IEP with

a written statement specifically designed to address a student’s nutritional needs (USDA

Food and Nutrition Service, 2001).

Diet Prescription

The following text is taken from the United States Department of Agriculture Food

and Nutrition Service document, Accommodating Children with Special Dietary Needs in the

School Nutrition Programs: Guidance for School Food Service (2001).

Physician's Statement for Children with Disabilities USDA regulations 7 CFR Part 15b require substitutions or modifications in school meals for children whose disabilities restrict their diets. A child with a disability must be provided substitutions in foods when that need is supported by a statement signed by a licensed physician. The physician's statement must identify:

• the child's disability; • an explanation of why the disability restricts the child's diet; • the major life activity affected by the disability; • the food or foods to be omitted from the child's diet, and the food

or choice of foods that must be substituted. [Page 5] Medical Statement for Children with Special Dietary Needs

Each special dietary request must be supported by a statement, which explains the food substitution that is requested. It must be signed by a recognized medical authority. The medical statement must include:

• an identification of the medical or other special dietary condition which restricts the child's diet;

• the food or foods to be omitted from the child's diet; and • the food or choice of foods to be substituted.

[Page 6]



The Role of School Food Service

The following text is taken from the United States Department of Agriculture Food

and Nutrition Service document, Accommodating Children with Special Dietary Needs in the

School Nutrition Programs: Guidance for School Food Service (2001).

III. SCHOOL ISSUES

The school food service, like the other programs in the school, is responsible for ensuring that its benefits (meals) are made available to all children, including children with disabilities. This raises questions in a number of areas: A. What are the responsibilities of the school food service? A. SCHOOL FOOD SERVICE RESPONSIBILITIES

• School food service staff must make food substitutions or modifications for students with disabilities.

• Substitutions or modifications for children with disabilities must be based on a prescription written by a licensed physician.

• The school food service is encouraged, but not required, to provide food substitutions or modifications for children without disabilities with medically certified special dietary needs who are unable to eat regular meals as prepared.

• Substitutions for children without disabilities, with medically certified special dietary needs must be based on a statement by a recognized medical authority.

• Under no circumstances are school food service staff to revise or change a diet prescription or medical order.

• For USDA’s basic guidelines on meal substitutions and accessibility, see FNS Instruction 783-2, Revision 2, Meal Substitutions for Medical or Other Special Dietary Reasons, in Appendix A. [Page 7]

• It is important that all recommendations for accommodations or changes to existing diet orders be documented in writing to protect the school and minimize misunderstandings. Schools should retain copies of special, non-meal pattern diets on file for reviews.

• The diet orders do not need to be renewed on a yearly basis; however schools are encouraged to ensure that the diet orders reflect the current dietary needs of the child.



Providing Special Meals to Children with Disabilities The school food service is required to offer special meals, at no additional cost, to children whose disability restricts their diet as defined in USDA's nondiscrimination regulations, 7 CFR Part 15b.

• If a child's IEP includes a nutrition component, the school should ensure that school food service managers are involved early on in decisions regarding special meals or modifications.

• The school food service is not required to provide meal services to children with disabilities when the meal service is not normally available to the general student body, unless a meal service is required under the child's IEP.

For example, if a school breakfast program is not offered, the school food service is not required to provide breakfast to the child with a disability, unless this is specified in the child's IEP. However, if a student is receiving special education and has an IEP, and the IEP indicates that the child needs to be served breakfast at school, then the school is required to provide this meal to the child and may choose to have the school food service handle the responsibility. This is discussed in more detail in Section V, under Situation 2. Menu Modifications for Children with Disabilities Children with disabilities who require changes to the basic meal (such as special supplements or substitutions) are required to provide documentation with accompanying instructions from a licensed physician. [Page 8] This is required to ensure that the modified meal is reimbursable, and to ensure that any meal modifications meet nutrition standards which are medically appropriate for the child. Texture Modifications for Children with Disabilities For children with disabilities who only require modifications in texture (such as chopped, ground or pureed foods), a licensed physician's written instructions indicating the appropriate food texture is recommended, but not required. However, the State agency or school food authority may apply stricter guidelines, and require that the school keep on file a licensed physician's statement concerning needed modifications in food texture.

• In order to minimize the chance of misunderstandings, it is recommended that the school food service, at a minimum, maintain written instructions or guidance from a licensed physician regarding the texture modifications to be made. For children receiving special education, the texture modification should be included in the IEP.



• School food service staff must follow the instructions that have been prescribed by the licensed physician.

Serving the Special Dietary Needs of Children Without Disabilities Children without disabilities, but with special dietary needs requiring food substitutions or modifications, may request that the school food service meet their special nutrition needs.

• The school food authority will decide these situations on a case-by-case basis. Documentation with accompanying information must be provided by a recognized medical authority.

• While school food authorities are encouraged to consult with recognized medical authorities, where appropriate, schools are not required to make modifications to meals based on food choices of a family or child regarding a healthful diet. [Pages 7-9]

Additionally, it is the goal of the school nutrition program to provide healthful meals

for all children, which are based on established nutrition standards and consistent with the

Dietary Guidelines for Americans.

It is also important to note that it is not the responsibility of the school food service to

determine what foods may be substituted in special diets. The physician or recognized

medical authority should provide specific instructions for the school food service to follow.

USDA strongly recommends that the school food service department work with

students, teacher(s), school nurse, dietitian, parent(s), and the child’s physician in a team

approach to address meeting the needs of children with disabilities who are unable to

consume the school meal as prepared because of their disability.

Description of

Selected Disabilities



Description of Selected Disabilities

There are a number of disabilities or conditions that cause physical or mental

impairment and may result in a nutritional problem, which requires a modification of the

usual school breakfast or lunch. The condition may affect the energy needs of the child, the

actual ingredient content of many of the foods normally served, how the food is prepared, or

the texture of the food served such as regular, chopped, blended, or pureed.

When a diet prescription is written, it will generally contain a diagnosis or description

of the condition. The diagnosis or condition description is important because it will help the

food service director and the staff to understand why the menu change is needed (See

Appendix 1).

Autism

Autism is a part of the Autism Spectrum or group of disorders. Generally it is

identified when a child has many behavioral problems such as not connecting with children

or adults, often refusing to establish eye contact, not talking to others, and is very limited in

their food intake. There are clinics that treat these children with a special meal plan that

omits all foods that contain gluten, a product of wheat and some other cereals, and casein, the

protein component of milk (Cornish, 2002). Although results have not been universally

beneficial, many physicians prescribe the diet. The types of foods to avoid are listed in

Appendices 1 and 2. There are other types of autistic disorders which are listed under

Autism Spectrum disorders, but their treatment is very similar to the one just described

(Fugassi, Stevens & Ekvall, 2003).



Cerebral Palsy

Cerebral Palsy (CP) is a disorder where there has been an injury to the developing

brain early in life. Frequently it is the result of a premature birth or other problems

associated with pregnancy such as blood type incompatibility or placental insufficiency. It is

estimated that its occurrence is two per 1000 live births. Some of the signs and symptoms of

CP include increased motor tone and abnormal motor patterns and postures. Some children

with CP have low muscle tone. They require early treatment by speech therapists, physical

therapists, and occupational therapists to work with motor development that involves the

ability to crawl, walk, talk, and develop oral motor feeding skills. Although CP is primarily

a motor disability, it can be accompanied by mental retardation and learning disabilities.

From infancy on, many children with CP have difficulty gaining weight, receiving

adequate nutrition due to feeding problems such as difficulties with sucking, chewing and

swallowing normally, and later feeding themselves. This can contribute to an inability to

gain weight and grow adequately in length or height. Often speech is delayed or difficult to

understand. Walking may be difficult or the child may not be able to walk. Any of the

nutrition problems listed in the medical prescription could be included in the IEP (Fung et

al., 2002).

What to expect in the Diet Prescription:

1. Increased calories

2. Texture changes—could be chopped, pureed, or blended

3. Special utensils for self-feeding

4. Positioning (correct positioning often improves the child’s chewing and swallowing ability)

5. Thickened liquids



Epilepsy or Seizure Disorder

Epilepsy (or seizure disorder) has multiple causes involving the brain. The seizures

that occur are sudden episodes of abnormal behavior which result from what is described as

“firings” within the brain. The behavior may be mild with rolling or blinking of the eyes or

may be very obvious with the child falling to the floor in generalized seizures.

Seizures can be caused by a metabolic problem such as hypoglycemia (low blood

sugar) or poor control of diabetes with excess insulin administration. Seizures can also occur

when there are abnormalities involving the electrolytes of the body such as sodium and

potassium. Most children who have been diagnosed with a seizure disorder are treated with

medications called anticonvulsants. These medications help to prevent or reduce the

occurrence of a seizure. These medications may also contribute to constipation problems.

Some children are placed on diet plans called ketogenic diets which are very high in fat and

low in carbohydrates (Vining, 2002). These diets require special planning by a dietitian

following the children in a clinical program and must be followed rigidly to produce optimal

results.

What to expect in the Diet Prescription

1. The child with epilepsy or seizures may have a low calorie diet order due to excessive weight gain prompted by an anticonvulsant medication. (Some seizure medications may cause weight loss.)

2. A ketogenic diet (requires input from the dietitian following the child)

3. Instructions to address feeding problems



Muscular Dystrophy

There are many forms of muscular dystrophy (MD). They are referred to as a group of

genetic disorders characterized by progressive weakness and degeneration of the skeletal

muscles that control movement. Some of the forms of MD are congenital or present at birth,

while others are identified in adolescence. The three most common are Duchenne,

facioscapulohumeral, and myotonic. Duchenne primarily affects boys, and as the disease

progresses, the boys will be unable to walk and will require a respirator to breathe. There is

no specific treatment for any of the forms of muscular dystrophy, but providing adequate

nutrition is very important. As the disease progresses, feeding and the ability to chew and

swallow may be difficult.

Mental Retardation

Often mental retardation is caused by conditions called syndromes. Syndromes are

defined as a set of characteristics which occur together. Two of the most common are Down

syndrome and Prader-Willi syndrome.

Down Syndrome is a disorder of the chromosomes. The normal genetic pattern of

chromosomes is when each individual has 23 pairs in each cell or a total of 46 chromosomes.


1. Feeding problems

2. Need for special utensils

3. Texture modification for chewing and swallowing problems




The individual with Down syndrome will have an extra chromosome on the 21st chromosome

and is sometimes called Trisomy 21. The incidence of Trisomy 21 or Down syndrome is 1 in

600 live births. The infant may be born with a heart defect, and it is common for the infant

to have slanted eyes, flattened nose, low set ears, and low muscle tone. Many infants with

Down syndrome develop slowly related to cognitive and motor skills, crawling, and walking

(Blackman, 1990).

These children often have feeding problems due to a weak “suck” and are slow to cut

their teeth. Their growth may be slower, and they are often shorter than other classmates.

Nutrition problems are individualized, but their most frequent problem when school age, is

the potential to be overweight (Rubin, Timmer, Chioine, Braddock & McGuire, 1998). As

pre-schoolers, chewing and swallowing may be a problem, resulting in difficulty changing to

cup drinking and eating “table” foods.

Prader Willi (PW) Syndrome involves the 15th chromosome. Although PW is less

frequent than Down syndrome, it is now identified shortly after birth and appears with

characteristics similar to Down syndrome. The PW infant has very low muscle tone,

difficulty in sucking and swallowing, and may have failure to thrive. Later in the preschool

period, most children with PW have an overwhelming appetite and lack the ability to know


1. Low calories for the child who is overweight

2. Texture modification for chewing and swallowing problems

3. Self-feeding devices



when they are full. As a result, limiting their intake and the availability of food is extremely

important (Schoeller, Livitsky, Bandini, Dietz, & Walozak, 1988). In the past, these

individuals became extremely obese and difficult to manage. Even with better diagnostic

techniques, there continue to be children who are not diagnosed early and are identified once

obesity and unusual food consumption patterns become more evident. Under current

treatment with controlled food intake, increased activity, and use of growth hormone, the PW

child’s health picture is greatly improved. However, their appetite remains the same and

supervision is required to control the food consumed. Individuals with PW require regular

physical activity, which can be difficult due to the low muscle tone, and they may require a

calorie restricted plan.

Spina Bifida

Spina bifida is the term frequently used to describe various forms of a neural tube

defect. Other terms are myelomeningocele, meningocele, and spina bifida occulta. These

children are born with a lesion in the spinal column. In normal development the spine is

formed with a spinal cord making a column along the back surrounded by a membrane and

the bones of the spine. In spina bifida, the formation is incomplete and a sac is formed in the

back. The spinal cord grows into this sac, and the spinal nerves are not properly connected

to the spinal cord and the brain. This can result in many problems related to walking and

What to Expect in a Diet Prescription

1. Decreased calories

2. Supervision to prevent food seeking (Environmental controls are essential because children with PW cannot control this continual urge to obtain additional food.)



elimination since both the urinary tract and the intestinal tract can be involved. In addition

there can be a problem with the accumulation of the spinal fluid in the head causing a

condition called hydrocephalus. Surgical repair or closure of the lesion occurs shortly after

birth, and if needed, a shunt is placed in the head to drain off excess fluid, usually into the

abdominal cavity (Ekvall & Cerniglia, 2005).

Children with spina bifida encounter many health problems. These include urinary

tract infections, constipation, frequent infections involving the shunt, obesity, and feeding

problems related to swallowing. Since 1995, folic acid has been used to supplement the

dietary intake of women of childbearing age, and its use has resulted in a 20% decrease in the

incidence of spina bifida.

Cystic Fibrosis

Cystic fibrosis (CF) is a serious disorder of childhood characterized by the production

of increased amounts of mucus, progressive lung disease, and impaired absorption of fat and

protein. The child with cystic fibrosis has frequent respiratory symptoms such as coughing

What to Expect in the Diet Prescription

1. Possible low calorie meal plan

2. Extra fluids including cranberry juice (Overweight children may require low-calorie cranberry juice; be certain that the cranberry juice blend contains at least 27-30% cranberry juice.)

3. Increased fiber

4. Texture modification



and wheezing and may require frequent hospitalization and medications. CF is an inherited

disorder with both parents as carriers and has an incidence of 1 in 2000 births (Luder, 2005).

Treatment for cystic fibrosis consists of taking enzymes which improve the

absorption of proteins and fats. In addition, the child with CF may have lactose intolerance

which requires the elimination of milk and milk products. Lack of weight gain is frequently

a problem along with limited growth and vitamin and mineral deficiencies (Borowitz, Baker,

& Stallings, 2002).

Rett Syndrome

Rett syndrome (RS) is a neuron developmental disorder primarily involving girls.

Rett syndrome is a genetic disorder, characterized by a period of apparently normal

development followed by the arrest of developmental skills. There are problems with growth

starting with a deceleration of head growth after five months of age until 4 years of age. One

of the most identifiable symptoms is the loss of purposeful hand use and wringing of the

hands, along with impaired language and psychomotor retardation (Isaacs, Murdock, Lane,

& Percy, 2003).

Many RS children have problems with chewing and swallowing that leads to reduced

intake, reflux, and major problems with constipation. They may require increased fiber in

What to Expect in the Diet Prescription


2. Lactose free or reduced-lactose food choices

3. Increased protein



the diet, special feeding devices, and occasionally tube feeding. Routine monitoring of their

nutritional status throughout the life span is essential.

Refer to Table 1 for a summary of the most frequently occurring disabilities

requiring prescriptions for special meals.



Table 1. Frequently occurring disabilities

SYNDROME/DISABILITY Altered

Growth

Underweight

Obesity

Altered

Energy

Need

Constipation

/ Diarrhea

Feeding

Problems

Others

Cerebral Palsy

A disorder of muscle control or

coordination resulting from

injury to the brain during its

early (fetal, perinatal, and early

childhood) development. There

may be associated problems with

intellectual, visual, or other

functions

Underweight Increased

calories,

failure to

thrive

Constipation Oral / Motor

Problems,

inability to self-

feed,

Swallowing

incoordination

Central nervous

system

involvement,

Orthopedic

problems,

Positioning

problems

Down Syndrome (a genetic

disorder)

Results from an extra #21

chromosome causing

development problems such as

congenital heart disease, mental

retardation, small stature, and

decreased muscle tone

Overweight,

short stature

Caloric need

lower than

normal

Constipation Poor suck in

infancy,

Difficulty

transitioning to

textured foods

Gum disease,

increased risk

of heart disease

Prader-Willi Syndrome ( a

genetic disorder)

A disorder characterized by a

lack of internal controls

including uncontrollable eating

habits and inability to distinguish

hunger from appetite, severe

obesity, poorly developed

genitalia, and moderate

to severe mental retardation

Overweight,

short stature,

low muscle tone

Calorie need

lower than

normal.

Failure to

thrive in

infancy

Constipation

Weak suck in

infancy;

Requires a food-

controlled

environment

Risk of Diabetes

Mellitus, PICA

(a craving for

unusual or

inedible items;

this can be life-

threatening)



Table 1. Frequently occurring disabilities, continued

SYNDROME/DISABILITY Altered

Growth

Underweight

Obesity

Altered

Energy

Need

Constipation

/ Diarrhea

Feeding

Problems

Others

Autism

Classified as a type of pervasive

developmental disorder;

diagnostic criteria include

communication problems,

ritualistic behaviors, and

inappropriate social interaction

Refusal to eat

many foods

with texture

Very selective

in foods to

accept

Possible gluten

or casein

intolerance

Medication/

Nutrient

interaction

Cystic Fibrosis (CF)

An inherited disorder of the

exocrine glands, primarily the

pancreas, pulmonary system, and

sweat glands characterized by

abnormally thick luminal

secretions

Need for

increased

nutrient

intake; May

need increased

calories;

Decrease of

nutrients

related to

pancreatic

insufficiency

and chronic

pulmonary

infection

Increase

in secondary

illnesses

* Diabetes

* Liver Disease

* Osteoporosis

Spina Bifida

(Myelomeningocele)

Results from a midline defect of

the skin, spinal column, and

spinal cord. Characterized by

hydrocephalus, mental

retardation, and lack of muscular

control

Obesity Altered energy

needs based

on short

stature and

limited

mobility

Constipation Swallowing

problems

caused by the

Arnold Chiari

malformation

of the brain.

Urinary tract

infections;

Increased risk of

pressure ulcers

due to lack of

feeling in lower

body



Metabolic Diseases

Diabetes

Diabetes is a disorder in which the body is unable to produce or respond to insulin.

Insulin is the substance produced and secreted by the pancreas, and enables the body to

properly use sugar in the form of glucose, an essential source of energy for the body. There

are two types of diabetes: Type 1 and Type 2. Type 1 is insulin dependent and requires

insulin injections. Type 2 is usually treated with a diet and oral medication (American

Dietetic Association, 2000).

Early symptoms include excessive hunger and thirst, excessive urination, weight loss,

and fatigue. This may be a very common disorder facing school nutrition directors, due to

the increasing existence of childhood obesity.

The American Diabetes Association encourages effective school management

programs. Effective diet management at school promotes a better learning environment,

reduces student absences and classroom disruptions, and helps assure an effective response

to diabetes-related emergencies. Treatment includes dietary management with a diet limiting

simple sugars and fats and providing adequate amounts of complex carbohydrates and

proteins for growth and development. The diet should be designed to provide adequate

calories for the child’s age, sex, activity level, and growth rate. A physician’s order is

required to implement dietary modifications. The order from the physician should include a

copy of the child’s diet. It is also helpful if the family or physician provides guidance to the

school on the child’s target blood glucose range, insulin schedule, testing times, and

instructions for managing various situations (i.e., low blood sugar) (American Dietetic

Association, 2006).



Inborn Errors of Metabolism (IEM)

Inborn errors of metabolism (IEM) are disorders in which individuals have missing or

defective enzymes necessary to metabolize the food they eat. Food that is not broken down

properly may produce chemicals that can build up in various parts of the body and cause

medical problems that can be mild or very serious (Seashore & Wappner, 1999). The

treatment for many IEMs usually includes some type of diet changes and may require special

formula or supplements and/or medically modified foods. These diet changes can be very

different (even for individuals with the same disease) and relate both to the individual IEM

and how mildly or seriously affected an individual is.

Inborn errors of metabolism such as phenylketonuria, galactosemia,

arginosuccinicaciduria, glutaric aciduria, and others are types of metabolic diseases in which

the child or adolescent is unable to normally utilize the nutrients in regular meals. For

example, a child with phenylketonuria is unable to break down the protein sources he eats to

amino acids and then to smaller parts of the amino acids. This is because the child is unable

to secrete sufficient enzymes from the liver that breaks down protein. For that reason, if the

individual eats more protein foods than the body can process, high levels of phenylalanine

occur in the blood, go into the brain, and cause mental retardation. If the diet is managed

properly and the blood content of phenylalanine is controlled at an appropriate level, the

child can grow, function, and learn normally (March of Dimes, 2006). In galactosemia,

children are unable to use the carbohydrate found in milk products and some other foods, due

to an absent or defective enzyme. Reading labels is critical to successful diet implementation

for these individuals.



IEMs have traditionally been considered rare diseases that would seldom be

encountered in local schools. There are now new technologies available to states that have

led to expanded screening and diagnosis of many of these diseases in newborns. Early

detection and diet intervention help individuals function normally as long as their diet is

consistently maintained. Because of increased screening and successful treatment, we are

now seeing more of these children in our schools.

It is helpful for school personnel to be aware of which IEMs are included in newborn

screening in their individual state. This allows resources to be more readily available for

these conditions. However, it is important to remember that IEMs may be diagnosed without

required screening, and children with diagnosed conditions may relocate and require services

from states that may not screen for their diagnosis. Thus, it is very helpful for school food

service directors to know how to track appropriate IEM resources and be able to seek

specialized consultation quickly. The National Newborn Screening and Genetics Resource

Center (NNSGRC) maintains an updated report that provides tables identifying which

diagnoses are screened for in the United States (US). This report may be accessed at the

following Web site: http://genes-r-us.uthscsa.edu/nbsdisorders.pdf (The National Newborn

Screening and Genetics Resource, 2006). This link will provide a chart of which diseases are

screened by each state. Understanding the uniqueness of managing the diets of children with

IEMs will help food service personnel provide more optimal assistance.



One Diet Does Not Fit All

Because there is significant variation in disease presentation, different individuals

with the same IEM may be mildly affected while others are severely affected. Different

levels of restriction may be required even for individuals with the same diagnosis. Although

there are general management protocols developed for managing the diets for individuals

with IEMs, most diets must be individualized. Guidelines given to the schools (including

portions to be served) must be followed without exception. Measurement of even foods

allowed is critical since consuming too much of what is considered an “allowed” food can

produce medical problems. Special training and monitoring of food service personnel is

important to assure continued adherence to established protocols. Strict adherence to the diet

prescription enables the physician to make appropriate recommendations for diet adjustments

when needed.

Diets May Need Adjustments

Diets for individuals with IEMs may require adjustments because of growth, illness,

or changes in blood levels of monitored nutrients. This makes strict reliance on the initial

“medical authorization” almost impossible and requires a system that allows for routine diet

adjustments.

Need for Consultants

Some individuals with IEMs require use of special products or services. These

products may require special vendors as well as unique preparation techniques. Although

some may be essential (i.e., metabolic formulas), others may be optional or require selective

use (i.e., low protein products). Because of the complexity of IEM diets, school food service

personnel may find it helpful to seek consultation services from nutrition or genetic



specialists, especially when diets are first implemented. These communications can help

determine which products are being funded through other sources, which products will add

variety and which products may be helpful, but too costly for a local school to invest in.

Parents of children with IEMs are trained to manage their child’s diet and should provide the

school with the appropriate “medical authorization” and guidance. It is critical for the

families and the food service personnel to have an understanding regarding the

communication of the child’s diet information. How severely a child is affected, their age

and developmental stage, as well as the socioeconomic needs of each family may dictate

whether the family requests only minor accommodations or complete meal modifications.

For this reason, it may be more difficult for families to give the school a simple “allowed or

not allowed” list as with other types of diets. Because adherence to and monitoring of daily

intake is critical for these individuals, families are sometimes apprehensive and may be

overly protective. For unique situations, it is advisable for the school to have access to a

consultant or specialist. Such a consultant can function as an advocate and resource for the

school and assist with determining what would be reasonable and unreasonable requests.

An optimal communication approach requires the school to communicate with the

family about the normal menu offerings and allow the family to provide a modified menu

that indicates which items the child can have and specific portions of each food specified.

Schools are always advised to maintain documentation of all requests or guidance received

from parents in the event that questions or mishaps occur.



How To Handle Mistakes

If a mistake occurs, it is always in the best interest of the child and the school, for

information regarding the mistake to be communicated immediately to the parents. This is

important for several reasons. First of all, it will allow the child to receive emergency care if

needed (although this is seldom required). Secondly, knowledge of inappropriate

consumption will allow the parents to adjust the remaining intake for the day and actually

prevent an adverse rise or fall of blood levels. Thirdly, knowledge of inappropriate

consumption will provide an explanation of an unusual blood level and allow specialists to

make more appropriate diet adjustments.



Food Allergies and Food Sensitivities



Food Allergies and Food Sensitivities

Food allergy, which is also called food sensitivity, is an adverse reaction to a food

that involves the immune system. The immune system produces antibodies in response to

the consumption of specific components of food, which are called allergens, and a

physiologic reaction ensues that can be fatal. Approximately 6–8% of children suffer from

food allergy during their first three years of life and about 4% of the American population is

affected with food allergies. Food intolerances, such as lactose intolerance, do not affect the

immune system but may have symptoms similar to food allergy.

Common Food Allergens

The Food and Drug Administration (FDA) has identified eight major food allergens.

A food allergy is caused by a reaction to a food protein. The food industry sometimes uses

these proteins to make food taste better and have longer shelf life, which means that there are

hidden allergens in many processed foods. It is important to check food labels for allergy

warnings. The terminology “major food allergen” is defined by FDA as one of the following

foods or a food ingredient that contains protein derived from one of these foods.

• Crustacean shellfish, such as crab, lobster, shrimp • Egg • Fish such as bass, cod, flounder • Milk • Peanuts • Soybeans • Tree nuts, such as almonds, pecans, walnuts • Wheat

Foods that commonly contain the “Big Eight” allergens and should be avoided:

• Shellfish clams, crab, crawfish (crayfish-commonly dissected in biology classes), lobster, mollusks, mussels, oysters, scallops, snails, shrimp, seafood flavorings



• Egg egg, egg substitutes, macaroni, mayonnaise, meringue • Milk butter, buttermilk, cheese, cream (including whipped), cottage cheese,

custard, ice cream, sherbet, nougat (found in many candy bars), pudding, sour cream, yogurt, ingredients containing casein, lactose, or whey on food labels

• Peanut peanuts, peanut oil, ground nuts, mixed nuts, nut pieces, peanut butter, chocolate candies, candy bars, and ice cream may contain peanuts; READ LABELS CAREFULLY!

• Soy tofu, miso, soy sauce, tamari sauce • Tree nut almonds, brazil nuts, cashews, chestnuts, hickory nuts, macadamia

nuts, almond paste or extract, nougat, nut butters, pecans, pesto, pine nuts, pistachios, walnuts, other nut extracts

• Wheat bran, bread crumbs, crackers, flour (including whole wheat, enriched, all-purpose, cake, and graham flours), gluten, granola or granola bars, macaroni, spaghetti and other pastas, soy sauce, starch, modified food starch, hydrolyzed vegetable protein

Symptoms of Food Allergy

Wide ranges of symptoms have been reported in allergic reactions. Gastrointestinal

symptoms occur most frequently, followed by symptoms involving the skin and respiratory

system. Respiratory symptoms occur frequently in individuals with peanut and tree nut

allergy, while wheat allergy usually triggers GI symptoms. Especially sensitive peanut

allergies can trigger symptoms without the individual actually consuming peanuts; in these

cases, simply inhaling airborne particles from nearby peanuts can trigger a severe response.

Soy allergy usually triggers skin and respiratory response. An allergic reaction can involve

any combination of symptoms from any of the three categories. For most people, an allergic

reaction to a particular food is uncomfortable, but for some people, a food reaction can be

frightening and even dangerous. The most severe allergic reaction is anaphylaxis (Mayo

Clinic, 2006).

Three main categories of symptoms:

• Gastrointestinal (GI) affecting the stomach, small intestine, and large intestine • Cutaneous affecting the skin • Respiratory affecting the throat, lungs, and breathing



Gastrointestinal symptoms associated with food allergy:

• Abdominal pain (stomach cramps) • Nausea • Vomiting • Diarrhea • Gastrointestinal bleeding

Cutaneous, or skin, symptoms associated with food allergy:

• Skin inflammation (swelling) • Rash (change of color, usually red) • Itching of any body part • The following skin conditions can occur: ▪ Hives patches of skin become red, swollen (bumpy), and itchy ▪ Eczema large areas of skin become dry, hot, itchy, and red

Respiratory symptoms associated with food allergy:

• Runny or stuffy nose • Itching of the nose, roof of mouth, throat, eyes, and ears • Swelling or watering of the eyes • Sneezing • Asthma narrowing or blocking of the air passages characterized by: ▪ Difficulty breathing or swallowing ▪ Shortness of breath ▪ Wheezing and repetitive coughing

Anaphylaxis

Anaphylaxis (anaphylactic shock) is a sudden, severe allergic reaction that involves a

person’s whole body and can result in death. Symptoms can begin anywhere from five

minutes to one hour after exposure to the allergen. Individuals who have experienced

anaphylaxis have an increased chance of experiencing it again, so it is important for these

individuals to carry medicine (an injection of epinephrine) and strictly avoid the foods that

cause allergic reactions. Epinephrine is a hormone administered by injection to counteract

anaphylactic shock by opening the airways and maintaining heartbeat and blood pressure

(National Institutes of Health, 2006). Anaphylactic reactions to food occur in children and



adolescents, and the failure to recognize the severity of the reactions and to administer

epinephrine promptly increases the risk of a fatal outcome (Sampson, Mendelson, & Rosen,

1992).

Signs of anaphylaxis include any or all of the above allergic symptoms as well as:

• Confusion • Rapid or weak pulse • Blue skin • Slurred speech • Loss of consciousness (fainting)

Managing Food Allergies in Children

The FDA 2005 Food Code recommends that the person in charge of a food service

operation should be able to identify major food allergens and describe symptoms identified

with food allergy (FDA, 2006). A policy should be established for each school on how to

handle food allergies. The Food Allergy and Anaphylaxis Network (2006) states that a

written emergency action plan signed by the child’s physician should be available for all at-

risk children to ensure quick treatment of an allergic reaction. Parents, children, and school

staff should work together in developing individualized action plans for each child with food

allergy or food hypersensitivity. Managing food allergies begins with prevention.

In the kitchen:

• Know which foods to avoid. Read food labels to identify potential allergy-causing ingredients. Request lists of foods to avoid from the parents of children with food allergies and post these lists where they are visible.

• Keep the kitchen organized to avoid cross-contamination. Designate an area in

the kitchen for preparing allergy-free meals. Sometimes allergic reactions are triggered by cross-contamination during cooking. The use of separate utensils during cooking, preparing, and serving of food can help to avoid cross-contamination. Cross-contamination can occur when allergen-containing ingredients are transferred to allergy-free food by hands, food-contact surfaces, sponges, cloth towels, and utensils.



• Clean. Thoroughly clean the surfaces and utensils involved in the preparation of foods with potentially harmful ingredients, especially if these surfaces and utensils will also be used to prepare allergy-free meals.

Outside the kitchen:

• Communicate with students and parents. Identify the students with food allergies. Work with the families to develop the best plan for handling the allergy. Ask questions whenever needed.

• Develop a plan. Come up with a way to identify students with food allergies as they

move through the cafeteria line. Young children especially cannot be relied upon to alert food service staff to an allergy. A written plan is necessary to avoid accidental allergic reactions.

• Work as a team. Involve parents, siblings, and teachers in the management of a

child’s food allergy. Older siblings can be especially helpful in monitoring a young child’s food intake in the cafeteria.

• Don’t leave the responsibility to the child. It is important to stay involved during

mealtimes. Monitor the child as he or she moves through the cafeteria line, eats, and prepares to return to class. Symptoms of allergic reaction can occur immediately or up to several hours after mealtime.

Monitoring for an allergic reaction:

• Know the signs and symptoms. • Less obvious signs include putting hands in mouth, pulling or scratching tongue,

voice becoming hoarse or squeaky • Be aware of phrases a child might use to describe an allergic reaction, such as

▪ Mouth, tongue, and/or lips: “burning,” “tingling,” “hot,” “feel funny,” and “itchy.”

▪ Throat: “closing up,” “feels thick,” and “feels tight” “has something stuck in it” ▪ Ears: “itchy,” and “like something’s crawling in them”

Remember, since food allergy reactions can occur anywhere on school property,

teachers, administrators, staff, and food service personnel should become aware and



knowledgeable about food allergies, symptoms, and specific food allergies known to occur in

children attending the school. When working with food, always read food labels on

everything.

Food Intolerance

Food intolerance is an adverse reaction to a food and is caused by toxic,

pharmacologic, metabolic, or idiosyncratic reactions to a food or chemical substances in food

that does not involve the body’s immune system. Symptoms caused by food intolerances

include gastrointestinal, cutaneous, and respiratory problems and are often similar to those

caused by food allergy.

The most common food intolerance is lactose, which is the sugar in milk. Unlike

milk allergy, which is an allergic response to a protein in milk, milk intolerance does not

involve production of antibodies by the immune system. However, the symptoms of milk or

lactose intolerance can be quite uncomfortable and painful for children. Common symptoms

of lactose intolerance include gastrointestinal cramping and pain, bloating, nausea, gas, and

diarrhea. Children who are lactose intolerant should not be forced to drink milk. Lactose-

free milk and over-the-counter enzyme therapy are available.

Other food intolerances include certain food additives such as preservatives, flavor

enhancers such as monosodium glutamate (MSG), coloring agents such as tartrazine (FD&C

No. 5), and sulfites in foods. It is estimated that 1% of people are intolerant to sulfite and

about 5% of those are asthmatic. Sulfite is used in many foods to prevent browning, control

microbial growth and spoilage, and modify the texture of food. Sulfite reactions are very

individualized and vary with each person.



Celiac Disease

Celiac Disease, also known as celiac sprue, nontropical sprue, and gluten-sensitive

enteropathy, is a digestive disease that damages the small intestine and interferes with

absorption of nutrients from food (Stevens, 2005). Persons with celiac disease may have a

variety of symptoms.

Symptoms are typically digestive, and may involve gas, recurring abdominal bloating

and pain, chronic diarrhea, and/or pale, foul-smelling, or fatty stool. Fatigue, weight loss or

weight gain, and unexplained anemia are also symptoms. Seizures, delayed growth, failure

to thrive, and malnutrition are also found with celiac disease (Stevens, 2005). Curiously,

some persons have no symptoms other than the damage in the intestine (See Appendix 3).

Treatment Strategies

The only treatment for celiac disease is to follow a gluten-free diet. A gluten-free

diet involves removing wheat, rye, oats, and barley from any foods eaten. Hidden sources of

gluten include additives such as modified food starch, preservatives, and stabilizers. Strict

compliance with the diet is essential to establish optimal health (Celiac Disease. National

Digestive Diseases Information Clearinghouse, 2006).

What can persons with Celiac Disease actually eat? Meat, fish, rice, fruits, and

vegetables in their original state do not contain gluten. Plain, cooked foods are safe to eat.

The Manual of Clinical Dietetics published by the American Dietetic Association, provides a

list of foods which can be eaten and which should be avoided (The American Dietetic

Association, 2000).



Cross-contamination is a concern in managing the gluten-free diet. Adherence to

careful kitchen procedures is critical. Following the established recipes exactly will help

persons with Celiac Disease (or their parents) feel safe while eating at school.

Issues Impacting Nutrition and Special Dietary Orders



Issues Impacting Nutrition and Special Dietary Orders

There are many nutrition problems which occur with the conditions discussed in this

handbook. The most common nutrition problems include:

• Energy needs which may be lower than normal leading to overweight, or higher than normal leading to underweight or failure to thrive.

• Feeding problems related to difficulty in chewing and swallowing or

increased or decreased muscle tone. • Altered nutrient needs such as carbohydrates, amino acids, protein, fiber,

gluten and casein, and others.

Energy Needs

Overweight

Children with Down syndrome, Prader-Willi syndrome, and spina bifida often require

meals lower in energy value than other children because of limited mobility and low muscle

tone. Two important factors are involved in the management of weight problems for all

children: (1) determining the energy level required for the individual child and (2) increasing

the activity level. School food service will be the contributor of an appropriate meal pattern

but not the activity level of the child. If weight management for the child with a

developmental disability is necessary, it should be a part of the IEP, which will involve the

parents, teachers, therapists, and the school food service director. The School Meal

Prescription (Exhibit 1) is attached and should be filled out to indicate a particular energy

value (Alabama Department of Education, 1999).



Table 2: Intervention strategies for reducing calories in school lunch and breakfast.

• Select meats, fish, and poultry low in fat • Limit preparation to baking and broiling; omit frying • Limit the serving size • Emphasize salads and vegetables • Replace high sugar desserts with fruit • Provide skim or low fat milk

Table 3. Modification of the Regular Menu—Lunch

Menu

Low calorie

High calorie

Chopped

Ground

Pureed

Hamburger no change add cheese served with noodles

ground, with cream soup added

puree with beef or tomato soup

Buns

no change add margarine

cut into quarters

substitute noodles

soup or mashed potatoes

French Fries baked French fries

no change mashed potatoes

mashed potatoes

mashed potatoes

Broccoli no change no change, add margarine or cheese

chopped and cooked

mashed blended with cream soup

Canned Peaches

sugar free canned peaches

no change cut into small pieces

chopped and mashed

pureed with juice

Milk 1 % whole whole whole whole



Underweight

Children with cerebral palsy, extreme prematurity, Rett’s syndrome, or pulmonary

disease may be in the group who tend to be thin, and have a greater inability to gain weight.

Their diet prescription may read high calorie or specify a definite number of calories. These

children often have poor appetites or like only a few foods. They may tire easily while

eating and just stop. It is usually not effective to increase the calories for these children with

large or double portions. The key is to increase calories by adding fats, oils, sugars, or

thickeners such as cereal or commercial supplements to the food without increasing the

serving size. Some of the foods that can be added to increase calories are listed in Table 4.

If the child requires a supplemental beverage, the school is required to provide that

beverage unless the parent is enrolled in a supplemental program such as Medicaid. An

additional consideration for the child who is underweight and has a picky appetite is to make

sure that they eat where distractibility is low. This may mean a corner of the cafeteria

(Alabama Department of Education, 1999). Refer to Table 3, for a sample menu modified

for increasing calories. Table 4 shows ways to increase calories.



Table 4. Ways to Increase Calories

Food Calories Suggested Use Cheese 75-120/oz Add to creamy foods Infant cereal 15 calories/T Add to fruits, soups, cereal Eggs, cooked 75/egg Baked goods, meat loaf and

puddings Evaporated Milk 40 calories/oz Beverages, soups, cereals,

puddings Powdered Milk

25 calories /T Soups, mashed potatoes, cream sauces, puddings.

Peanut Butter* (peanut butter may be a choking risk for children with swallowing disorders)

87 calories/T With crackers or bread

Margarine 100 calories/T Add to meats, hot cereal, vegetables or bread

Vegetable Oil 110 calories/T Soups, casseroles, vegetables, gravies

Baby Food Meat 100-150 cal/jar Mix with cream soups, thin mashed potatoes, soups

Commercial Nutrition Supplements

30 cal per oz Serve as beverage

Graham Crackers/Vanilla Wafers

20-30 calories each Snack

From Meeting Their Needs, by the USDA/FNS, 1993 with permission

Feeding Problems

What is a feeding problem? A feeding problem is defined as the inability to consume

adequate food or liquid due to a neuromuscular disturbance, behavioral problems, or both,

which alter intake. The conditions associated with impaired feeding include prematurity;

cardiopulmonary compromise; defects of the oral cavity and oropharynx; defects of the

larynx, trachea and esophagus; neurologic defects; and neuromuscular disease. The feeding

problems associated with the conditions described usually start in infancy and if treated in

Early Intervention Programs from birth to three may be non-existent by the time the child



starts school. Unfortunately, many of these conditions are present in the school age child and

require feeding intervention by therapists and modification of food intake (Cloud, Ekvall, &

Hicks, 2005).

Feeding problems are usually classified as oral-motor, positioning, self-feeding, or

behavioral. The oral-motor problems involve sucking, swallowing, and chewing. Positioning

problems may include the inability to sit in a regular chair, inability to hold up the head, and

lack of stability of the trunk. Self-feeding problems usually include the inability to hold

feeding utensils or a cup. Behavioral problems include refusal to eat, distractibility during

mealtime, crying, throwing food on the floor, and extreme selectiveness about foods.

Oral-Motor Problems

For the child with any of the oral motor problems (sucking, swallowing, or chewing)

changes in food textures are commonly needed. The school nutrition program is the best

provider of nutritious foods modified in texture. Participation in the school nutrition

program is preferred over food sent from the home or food blended by the teacher in the

classroom. Food safety is extremely important in all aspects of food service and may not be

appropriately followed in the classroom.

Textures are modified to make eating safe for the child and to stimulate feeding

development. Close communication with the teacher or therapist working on the feeding

problem is important because various textures may be requested. Some children have

increased sensitivity to food texture, so being consistent each day in preparing ground or

blended foods is important.



Some foods such as mashed potatoes, oatmeal, pudding, and some soups do not

require special preparation for a child who has difficulty with chewing. Preparation of meats

and other foods that are difficult to chew may be ordered as part of the physician’s

instructions and clarified by the speech therapist, occupational therapist, registered dietitian,

or parent.

Modification of Food Texture

• Chopped Food is chopped by cutting it into bite-sized pieces with a food chopper, knife, food processor, or French knife.

• Ground Food should be soft or small enough to swallow with little or no chewing. The food is ground using a food processor or blender.

• Pureed Food has a smooth texture similar to pudding. The food should not be runny. The food is pureed in a food processor or blender. In order to puree many foods, a small amount of liquid has to be added to avoid dryness and to make it smooth (American Dietetic Association, 2002). The National Dysphagia diet is now available and can be applied for children with oral-motor problems. It consists of three levels and could possibly be ordered for the child in school (See Appendix 4).

Students with swallowing problems may require thickened beverages which are

usually requested by the speech or occupational therapist or the physician. Generally the

therapist will add the powdered thickener to the beverage unless specific instructions are

given to the teacher. There are a number of commercial products used to thicken beverages

and a variety of pre-thickened beverages are also available (See Resources section of this

handbook.)

Positioning Problems

Assessment of positioning problems is usually completed by the physical therapist or

occupational therapist and includes observation of head control, trunk control, foot stability,

placement of the hip and pelvis, shoulder girdle, knee flexion, and sitting base. Appropriate



positioning varies depending on the problem identified and could include reclining on the

stomach, lying on the side, sitting, or standing. Children fed in this position would rarely be

fed in the cafeteria. However, children fed in a wheel chair designed especially for their

problem would require a table that accommodates the wheel chair. Proper positioning

improves visual control by the child, increases food intake since the child may better see the

food being offered, and enhances the ability to self-feed (American Dietetic Association,

2003).

Behavioral Issues

Behavioral issues may include distractibility during the mealtime and difficulty in

completing a meal, refusal to eat, spitting out food, or knocking food utensils on the floor.

Although behavioral intervention is the role of the teacher or therapist, food service provides

a great service by working with the therapist in providing small servings, limiting the number

of foods served, or finding the ideal placement of the child in the school cafeteria.

Behavioral issues should be a part of the Individualized Education Program (IEP), and the

IEP meeting should include the School Food Service Director.

Self-feeding

Children with muscle control problems such as cerebral palsy have difficulty in

holding a spoon or fork for self-feeding. There are many devices available for use with these

children; however, the child needs training in how to use these devices. The training is

usually provided by the therapist or teacher. Provision of this equipment and the washing

and sanitizing of the equipment is the responsibility of the Child Nutrition Program. In some

schools the Special Education Program will provide the special utensils. Some individuals



will require adaptive utensils, cups, or plates (for example: built-up handled utensils, cups

with handles, cut-away cups, high-sided plates, scoop plates, etc.).

Tube Feedings

Tube feedings are frequently ordered for the child with a severe feeding problem that

has not improved with the usual oral-motor intervention or if the child cannot swallow

without getting food or liquid into the lungs. Often the child who is tube fed is severely

underweight, and the child is unable to gain weight with oral feedings. Giving the tube

feeding is the responsibility of a nurse or therapist assigned by the school. The provision of

the formula is the responsibility of either the parent or the school. If refrigeration of the

formula is needed, it is the responsibility of the school to provide adequate refrigeration.

[Note: Un-opened formulas are usually not refrigerated. Refrigeration could change the

viscosity (stickiness or gumminess) and thereby decrease tolerance of the formula.]

Special Formulas and Special Medical Foods



Special Formulas and Special Medical Foods

At times, the school may need to supplement the usual IEM diet by providing some

specially modified products. This will help to expand the offerings available to a child. This

can range from ordering special formulas to food products that have been modified for

specific diagnoses. At times, this is beneficial to decrease the boredom that can occur when

an individual must consume a very restricted diet throughout life. When good relationships

exist between the family and the school, families also may provide some items. It is

advantageous for the school to have a supply of what is traditionally referred to as “free

foods”. These are foods that do not contain restricted ingredients, and family members can

provide a list. “Free foods” are very helpful if a child refuses the diet the family has

requested and can be used for snacks or special events that may occur without enough

warning for food service personnel to contact a parent for additional guidance.

The Purchasing of Special Formulas and Special Medical Foods

The cost of these specially formulated foods is borne by the School Nutrition

Program. Generally the family will provide a special formula for a disorder such as PKU or

other inborn errors of metabolism. Schools may not charge children with disabilities or with

certified special dietary needs who require food substitutions or modification more than they

charge other children for program meals or snacks (USDA Food and Nutrition Service,

2001).

A potential funding source for children with special needs is Individuals with

Disabilities Education Act (IDEA), which provides money to the states for students who

need special education and related services. Services which can be funded under IDEA



include purchase of special foods, supplements or feeding equipment, services of a registered

dietitian or nutrition professional, and services of the special education teacher, occupational

therapist, or other health professional in feeding the child or developing feeding skills

(United States Department of Agriculture-Food and Nutrition Service, 2001).

Medicaid is another resource for funding special dietary supplements, eating devices,

and nutritional consultation as medically necessary. The Medicaid program varies from state

to state in the type and amount of services it will provide.

Fluids and Fiber

Fluid and fiber content of the school meals are usually identical to the

recommendations for the general population. Children with disabilities and special health

care needs often have problems with adequate fluid consumption and with fiber

consumption. As a result, constipation may be a severe problem for some children,

necessitating extra fluids and fiber. Table 5 lists the recommended amount of fluid and fiber

based on the Dietary Reference Intake.



Table 5. Recommended amount of fluid and fiber for children and adolescents.

Recommendations by Weight

Fluid Recommendation Fiber Recommendations by age in grams

< 10 kg 80-120 ml/kg 4-8 yrs — 25 g

> 10 kg 1000 ml + 50 ml for each kg > 10 kg 6-8 cups

9-13 yrs male—31 g

> 20 kg 1500 ml + 20 ml/kg for each kg > 20 kg

9-13 yrs female—26 g

14-18 yrs male—38 g 14-18 yrs female—26 g

Fluid Adapted from Isaacs, JS. Fluid and Bowel problems. Chapter in Lucas BL, Feucht SA, Greiger LE, editors, 2004. Children with special health care needs: Nutrition care handbook. Pediatric Nutrition Practice group and Dietetics in Developmental and Psychiatric Disorders, American Dietetic Association.

Fiber Adapted from Dietary reference intake, Appendix 1-2. in Ekvall, S.W., and Ekvall, VK. , 2nd ed. 2005. Pediatric Nutrition in Chronic Diseases and Developmental Disorders, Prevention, Assessment and Treatment.



Intervention Strategies

and the Team Approach



Intervention Strategies and the Team Approach

Nutrition problems that involve the student with disabilities or special needs are

better served when various disciplines work together in a team approach. A team approach

will aid in assuring quality food service and acceptance of that food service. The makeup of

the team may include the teacher, food service director or manager, principal, special

education coordinator, speech therapist, physical therapist, occupational therapist, physician,

registered dietitian, feeding aides, nurse, and the parent (Cloud, Ekvall, & Hicks, 2005).

The first interaction of the team usually occurs during a meeting to design the

Individualized Education Program (IEP). When a nutrition problem exists, it should be a

part of the services addressed in the IEP. An example would be a child with spina bifida

who is overweight and also has a feeding problem, which involves swallowing. A diet

prescription is provided and signed by the child’s physician for a reduced calorie meal that is

of a consistency for safe swallowing. The intervention might include modifying the menu by

a registered dietitian, and the occupational therapist or speech therapist providing oral-motor

facilitation to improve swallowing. The role of the parent is to agree to follow through with

the same treatment at home and to communicate suggestions for addressing a particular

problem. Cultural factors should always be a consideration when plans are made.

Meetings of the IEP team should involve the food service director as often as

possible. The intent of the IEP is to plan a successful program for each child. When a

nutrition problem is involved, the existence of a meal prescription and inclusion of the

nutrition plan are important for a positive outcome for the child.



Environmental Considerations



Environmental Considerations

Dining Environment

The environment where the student with special needs eats is a very important part of

a successful food service program. It should be easily accessible and non-threatening to the

student with special needs, yet provide a setting where the child can feed himself or be fed.

Generally it is recommended that the student eat in the cafeteria with all of the students.

Under certain circumstances, it may be advisable for the child to eat in the classroom. The

child may need to be seated away from heavy traffic areas if he is easily distracted. Or, a

screen may be used to screen off sections of the room for distractible children. Seek input

from other members of the school team to make the dining room as safe and functional as

possible for all children. The following are some general principles for creating a user-

friendly dining environment (Meeting their Needs, 1993).

Scheduling

Allow ample time for the child to eat his school meal. It may be necessary to allow

the child to begin eating before the other students enter the cafeteria if distractibility is a

problem or if the child is a very slow eater.

Space

The dining space should encourage independence. Plan for appropriate space in the

dining area to accommodate wheelchairs and teachers or aides who may assist the child with

meals. The following are some general guidelines to consider:

• Doorways……..32” wide • Aisles…………34” wide



• Tables…………5-6 feet apart ▪ 30” above the floor ▪ 12” clearance underneath from the outer edge toward the interior of the table to accommodate a wheel chair

When considering the dining space for children with disabilities, also consider the

serving line area. The width of the serving line should be wide enough to accommodate

wheelchairs or walkers. Also, consider the height of the self-service areas. These areas

should also be accessible to children in wheelchairs.

Location

Getting to the cafeteria is also an important consideration for the child with

disabilities. Ramps or handrails may be needed to make the cafeteria accessible.

Lighting

Provide adequate lighting for students who are visually impaired. Use lighting to

create a warm atmosphere.

Dealing with Distractibility

Provide an area where a screen could be used to prevent the children who are

extremely distractible from seeing other children during the mealtime. This may require

rearranging a section of the cafeteria. Controlling distractibility can be a positive way to

increase the amount of food the child eats. The food service director, the teacher, and other

members of the team should work together to plan ways to meet the child’s needs while

maintaining dignity and respect.

Food Safety

Issues



Food Safety Issues

Serving safe food to children is the responsibility of everyone involved in handling

the food. Meals for children with special nutrition needs should be prepared and handled

following the same food safety procedures required for all other meals (Conklin, Nettles, &

Martin, 1998). Children are particularly vulnerable to potential foodborne illnesses –

especially children with special healthcare needs. From the time purchased foods are

received until the time they are consumed, it is critical that safe food practices be followed.

Some common food safety practices include:

• Washing hands frequently, properly, and at appropriate times • Cooking foods to the proper internal temperature • Using a calibrated thermometer for cooking, cooling, hot-holding, cold-holding,

and reheating • Cooling foods rapidly Regulations related to food safety practices may vary from state to state. It is

important to follow the specific requirements of your state and local health departments.



Glossary



Glossary

504 Accommodation Plan –A planning document used in schools for children who require

health related services (including modified meals) but who are not enrolled in a special

education program; mandated by the Rehabilitation Act of 1973.

Americans with Disabilities Act of 1990 (ADA) –Federal legislation enacted to protect

persons with disabilities from discrimination.

Children with Special Health Care Needs (CSHCN) –Children with a broad range of

chronic illnesses and conditions who require health and related services beyond basic,

routine care. CSHCN includes children with birth defects, neurological outcomes of

premature births, genetic syndromes, metabolic disorders, as well children suffering from the

after effects of alcohol, drugs, and infections such as meningitis. It is estimated that 50% of

the CSHCN population have nutrition problems.

Developmental Disabilities –A severe chronic disability attributable to a mental or physical

impairment or combination of a mental and physical impairment. It is manifested before an

individual is 22 years of age. It is likely to continue indefinitely, results in substantial

functional limitations in three or more areas of major life activity, reflects the person’s need

for a combination of special interdisciplinary or generic care, treatments or other services

that are lifelong or of extended duration, and are individually planned and coordinated.

Disability –A physical or mental limitation which substantially limits one or more of the

major life activities.



Early and Periodic Screening Diagnostic and Treatment Program (EPSDT) –A

preventive and comprehensive health care benefit for Medicaid-eligible individuals up to age

21 years of age. It includes screening for dental, hearing, and vision services. EPSDT

allows providers, including schools, to be reimbursed for preventive and treatment services

for Medicaid-eligible children.

Handicapping Condition –A physical or mental condition, which can lead to a disability.

This term is often used interchangeably with disability. The word “disability” is the most

current terminology.

Handicapped Participant 7 CFR 15 b.3 (i) –Any person who has a physical or mental

impairment which substantially limits one or more major life activities, has a record of such

impairment, or is regarded as having such an impairment. The word “disabled” is the most

current terminology.

Individuals with Disabilities Education Act (IDEA) of 1997 (PL102-114) –Federal

education legislation which includes part B for children from 3 through 12 years of age and

part C for Early Intervention Programs (birth through 3 years of age).

Individualized Education Program (IEP) –A planning document required annually for

special education services in public schools serving children older than 3 years of age;

outlines specific goals, activities, and time lines.

Individualized Family Service Plan (IFSP) –A planning document required for services for

children from birth to 3 years of age enrolled in early intervention services.

Major life activity –Functions such as caring for one’s self, performing manual tasks,

walking, seeing, hearing, speaking, breathing, learning, and working.

Reference List



Reference List

Alabama Department of Education. (1999). CARE: Special nutrition for kids.

University, MS: National Food Service Management Institute.

American Diabetes Association. (2006). Diabetes Management at School. Retrieved April 3,

2006 from http://www.diabetes.org/for-parents-and-kids/for-schools/diabetes-

management.jsp

American Dietetic Association. (2000). Manual of Clinical Dietetics (6th ed.). Chicago:

Author.

American Dietetic Association (2003). Position of the American Dietetic Association:

Providing nutrition services for infants, children, and adults with developmental

disabilities and special health care needs. Journal of the American Dietetic

Association, 104(1), 97-107.

Ani, C., Grantham-McGregor, S., & Muller, N. (2000). Nutrition supplements in Down

syndrome: Theoretical considerations and current status. Developmental Medicine &

Child Neurology, 42, 207-213.

Borowitz, D., Baker, R.D., & Stallings, V. (2002). Consensus report on nutrition for

pediatric patients with cystic fibrosis. Journal of Pediatric Gastrointeral Nutrition,

35, 246.

Case, S. (2002). Gluten-free diet: A comprehensive resource guide. Regina, Saskatchewan,

Canada: Centax Books.

Cloud, H.H., Ekvall S.W., & Hicks, L. (2005). Feeding problems of the child with special

health-care needs. In Ekvall, S.W. & Ekvall, V.K. (Eds). Pediatric nutrition in chronic

diseases and developmental disorders ( 2nd ed.) New York: Oxford University Press.



Conklin, M.T., Nettles, M.F., & Martin, J. (1998). Modified meals: Strategies for managing

nutrition services for children with special needs. School Foodservice and Nutrition,

52(7), 47-52.

Cornish, E. (2002). Gluten and casein free diets in autism: A study on effects on food choice

and nutrition. Journal of Human Nutrition Dietetics, 15(4), 261.

Ekvall, S.W., & Ekvall, V.K.(Eds.) (2005). Pediatric Nutrition in Chronic Diseases and

Developmental Disorders (2nd ed.). New York: Oxford University Press.

Food and Drug Administration. (2006). HACCP principles. Retrieved May 8, 2006, from

http://www.cfsan.fda.gov/-dms/fc01-a5.html

Food Allergy and Anaphylaxis Network.(2006). Managing food allergies in school:

Avoiding an allergic reaction. Retrieved May 3, 2006, from

http://www.foodallergy.org/school/avoid.html

Fung, E.B., Samson-Fangl, L., Stallings, V.A., Conaway, M., Liptak, G., Henderson, R.C.,

Worley, G., O’Donnell, M. Calvert, R., Rosenbaum, P., Chumlea, W., Stevenson, R.

D. (2002). Feeding dysfunction is associated with poor growth and health status in

children with cerebral palsy. Journal of the American Dietetic Association, 102, 361-

373.

Horsley, J.Q., & Shockey, W.L. (1999). Nutrition management for children with special

food and nutrition needs. In Martin, J., & Conklin, M.T. (Eds.), Managing Child

Nutrition Programs (pp. 363-387). Leadership for Excellence Gaithersburg, MD:

Aspen Publishers.



Isaacs, J.S., Murdock, M., Lane, J., Percy, A.K. (2003). Eating difficulties in girls with Rett

Syndrome compared with other developmental disabilities. Journal of the American

Dietetic Association, 103, 224.

Luder, E. (2005). Cystic fibrosis and bronchopulmonary dysplasia. In Ekvall, S.W., &

Eckvall, V. (Eds.), Pediatric Nutrition in Chronic Disease and Developmental

Disorders (2nd ed.). Oxford, UK: Oxford University Press.

Mahan, L.K., & Escott-Stump, S. (2004). Medical nutrition therapy for food allergy and food

intolerance. In Mahan, L.K., & Escott-Stump, S.,Krause’s Food, Nutrition, and Diet

Therapy (11th ed.). Philadelphia, PA: Saunders.

March of Dimes. (2006). PKU Fact Sheet Retrieved February 6, 2006, from

http://www.marchofdimes.com/professionals/14332_1219.asp.

Matalon, K.M. (2002). Developments in phenylketonuria. Topics in Clinical Nutrition, 16,

41-50.

Mayo Clinic.(2006). Peanut allergy. Retrieved May 3, 2006, from

http://www.mayoclinic.com/health/peanut-allergy/DS00710/DSECTION=2.

National Digestive Diseases Information Clearinghouse. (2005, October). Celiac Disease.

Retrieved February 6, 2006, from

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm.

National Dysphagia Diet Task Force. (2002). National dysphagia diet: Standardization for

optimal care. Chicago, IL: American Dietetic Association.

National Institutes of Health. (2006). Anaphylaxis. Retrieved May 3, 2006, from

http://www.nlm.nih.gov/medlineplus/ency/article/000844.htm.



National Newborn Screening and Genetics Resource Center. (2006). National newborn

screening status report. Retrieved May 1, 2006, from http://genes-r-

us.uthscsa.edu/nbsdisorders.pdf.

Pediatric Nutrition Practice Group & Dietetics in Developmental and Psychiatric Disorders

Practice Group. (2004). Children with Special Health Care Needs: Nutrition Care

Handbook. Chicago, IL: American Dietetic Association.

Rubin, S.S., Timmer, J.H., Chicoine, B., Braddock, D., McGuire, D.E. (1998). Overweight

prevalence in persons with Down Syndrome. Mental Retardardation, 36, 175-181.

Sampson, H.A. (2005). Food allergy—accurately identifying clinical reactivity. Allergy, 60

(s 79), 19-24.

Sampson, H.A., Mendelson, L., & Rosen, J.P. (1992). Fatal and near-fatal anaphylactic

reactions to food in children and adolescents. The New England Journal of Medicine,

327(6), 380-384.

Schoeller, D.A., Livitsky, L.L., Bandini, L.G., Dietz, W.W., & Walozak, A. (1988). Energy

expenditure and body composition in Prader-Willi syndrome. Metabolism, 37, 115.

Seashore, M.R., & Wappner, R.S. (1999) Section III. Inborn errors of metabolism. In

Genetics in Primary Care& Clinical Medicine. 1st ed. Samford, CT: Appleton &

Lange.

Stevens, L.M. (2005). Celiac Disease, JAMA Patient Page. Journal of the American Medical

Association, 293(19). Retrieved Februrary 10, 2006, from http://jama.ama-

assn.org/cgi/content/full/293/19/2432



United States Department of Agriculture, Food and Nutrition Service. (2001).

Accommodating children with special dietary needs in school nutrition programs:

Guidance for school food service staff. Alexandria, VA: Author.

United States Department of Agriculture, Food and Nutrition Services, Southeast Regional

Office, & University of Alabama at Birmingham, Department of Nutrition Sciences

and Sparks Clinic. (1993). Meeting their needs: Training manual for child nutrition

program personnel serving CSHCN. Atlanta, GA: Authors.

United States Department of Agriculture. (1999). USDA and FNS programs

nondiscrimination statements. Retrieved October 19, 2003, from

http://www.fns.usda.gov/cr/Policy/nondiscriminationstatement.htm

Vining, E.P. (2002). The ketogenic diet. Advances in Experimental Medicine and Biology,

497, 225-231.



Resources



Resources

Allergies The Food Allergy & Anaphylaxis Network http://www.foodallergy.org Celiac Disease American Dietetic Association http://www.eatright.org Celiac.com http://www.celiac.com Celiac Disease Foundation http://www.celiac.org Celiac Sprue Association http://www.csaceliacs.org Gluten Intolerance Group http://www.gluten.net http://www.gluten.net/diet.html National Institute of Diabetes & Digestive & Kidney Disease http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/ Diabetes Children’s Hospital and Regional Medical Center, Seattle WA http://www.cshcn.org/resources/DiabetesSafety.htm

Inborn Errors of Metabolism Arizona Department of Health Teachers Guides http://www.azdhs.gov/phs/oncdps/children/index.htm Other Relevant Web Sites The ARC www.thearc.org Advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. Asperger Syndrome Coalition of the U.S. www.irsc.org Internet Resource for Special Children



Autism Society of America www.autism-society.org The Center for Children with Special Needs http://www.cshcn.org/resources/birthdefects.cfm Centers for Disease Control www.cdc.gov/ncbddd Children With Special Health Care Needs http://www.northeasterncshcn.org/links.php Cleft Palate Foundation www.cleftline.org March of Dimes Glossary of Acronyms http://www.marchofdimes.com/professionals/580_9613.asp National Newborn Screening and Resource Center http://genes-r-us.uthscsa.edu/resources/newborn/overview.htm National Dissemination Center for Children with Disabilities www.nichcy.org National Down Syndrome Society www.ndss.org National Organization for Rare Disorders http://www.rarediseases.org/ Newborn Screening for Practitioners http://www.mostgene.org/pract/NBS%20Practitioner%202003.PDF PKU and Allied Disorders http://pku-allieddisorders.org/ Spina Bifida Association www.sbaa.org United Cerebral Palsy www.ucp.org

Appendices

Appendices



Appendix 1: Diet Prescription for Meals at School Name of Student: ____________________________________________________________ Special Meals Requested: _____________________________________________________ Diagnosis or medical condition that requires the student to have a special diet. Include a brief description of the major life activity affected by the student’s condition: __________________________________________________________________________ __________________________________________________________________________ Foods omitted and substitutions: Please check the food groups to be omitted. List specific foods to be omitted and suggest substitutions using the back of this form or attach information.

Milk and milk alternates ( ) Meat and meat products ( ) Bread and Cereal products ( ) Fruits and vegetables ( )

Textures allowed: Please check the allowed texture:

Regular ( ) Chopped ( ) Ground ( ) Pureed ( )

Other information regarding diet or feeding: __________________________________________________________________________ I certify that the above named student needs special school meals prepared as described above because of the student’s disability or chronic medical condition: ________________________________ _________________ ______________ Physician/Recognized Medical Authority Office Phone Date Source: CARE: Special Nutrition for Kids (1999)



Appendix 2: Foods to Avoid when Casein is omitted Milk: whole, low-fat, skim, sweet acidophilus, buttermilk Goat milk Lactose-reduced milk Non-fat dry milk or products that contain it Half and half Whipped cream Sour cream Sweetened condensed milk Evaporated milk Butter, margarine Cottage cheese Yogurt Cheese: American, swiss, blue, cheddar, parmesan, cream cheese Ice cream, regular or low-fat Sherbet, orange Cream soups Breads, cereal, crackers, dessert made with milk



Appendix 3: Gluten Free Foods by Food Groups Foods to Allow Foods to Avoid Milk Products—Milk, cream ice cream, Cheese yogurt

Malted milk, ice cream made with ingredients not allowed

Breads—Breads and baked products made with amaranth, arrow root, buckwheat, cornmeal, cornstarch, flax, legume flours, millet, potato flour, potato starch, rice bran, rice flour, sago, sorghum flour, soy flour, sweet potato flour, tapioca and teff.

All bread products containing wheat, rye, triticale, barley, oats, wheat germ, graham flour, gluten flour, durum flour, wheat starch, oat bran, bulgur, farina, wheat based semolina, spelt, kamut, einkorn, emmer, faro, imported foods labeled gluten free but containing wheat starch

Cereals Hot—Amaranth flaxes, cornmeal, cream of buckwheat, cream of rice, grits, rice flakes, soy flakes and soy grits Cold—puffed amaranth, puffed buckwheat, puffed corn, puffed millet, puffed rice, rice flakes and soy cereals.

Cereals made with wheat, rye triticale, barley and oats cereals with added malt extract and malt flavoring

Pastas—Macaroni, spaghetti, noodles made from beans, corn, pea, potato, quinoa, rice, soy and wild rice.

Pastas made from wheat, wheat starch, and other ingredients not allowed

Miscellaneous—corn tacos, corn tortillas

Wheat flour tacos, wheat tortillas

Meat and alternatives,--Meat, Fish, Poultry, fresh. Eggs, Lentils, chick peas, peas, beans, nuts, seed tofu.

Fish canned in vegetable broth containing HVP/HPP Deli or processed meats, sausages, wieners, salami, meat loaf, bacon, frozen meat patties

Fruits and Vegetables—All fresh frozen and canned.

Scalloped potatoes containing wheat flour, battered dipped vegetables.

Soups—Homemade broth, gluten-free bouillon cubes cream soups and stocks made from ingredients allowed

Soups made with ingredients not allowed Bouillon and bouillon cubes containing HVP/HPP or wheat

Fats—Butter, margarine, lard, vegetable oil, cream, shortening, homemade salad dressing made with allowed ingredients

Some mayonnaise and salad dressings that contain wheat flour or wheat starch Packaged suet



Appendix 3: Gluten Free Foods by Food Groups, continued Foods to Allow Foods to Avoid Desserts—Ice cream, sherbet, whipped toppings, egg custards, gelatin desserts; cakes, cookies, pastries made with allowed ingredients Gluten free ice cream cones, wafers and waffles

Ice cream made with ingredients not allowed; cakes, cookies, muffins, pies and pastries, ice cream cones, wafers and waffles made with ingredients not allowed

Miscellaneous: Sweets—Honey, jam, jelly, marmalade, maple syrup, molasses, sugar, brown and white, confectioner’s sugar. All Condiments except soy sauce made from wheat. Snack foods—Plain popcorn, nuts and soy nuts.

HVP—Hydrolyzed vegetable/plant protein when the source is from wheat protein HPP—Hydrolyzed plant protein when source is from wheat protein

Adapted from Case, S. (2002). Gluten-free diet: A comprehensive resource guide. Regina, Saskatchewan, Canada: Centax Books



Appendix 4: The National Dysphagia Diet (NDD) The National Dysphagia Diet was created to set standard terminology for a progressive diet to be used nationally in the treatment of dysphagia. The NDD requires specification of both the diet consistency and liquid viscosity. Dysphagia Pureed (NDD Level 1) This level consists of smooth pureed, homogenous, and cohesive foods. Foods should be pudding-like.

• Avoid gelatin, fruited yogurt, unblenderized cottage cheese, peanut butter, and any food with lumps including hot cereal and soup.

• Avoid scrambled, fried, or hard-boiled eggs; soufflés are allowed. • Mashed potatoes should be served with gravy, butter, margarine, or sour

cream • Pre-gelled slurried breads are allowed.

Dysphagia Mechanically Altered (NDD Level 2) This level consists of foods that are moist, soft-textured, and easily formed into a bolus; moist, tender ground, or finely diced meats; soft tender-cooked vegetables; soft ripe or canned fruit; slightly moistened dry cereal with little texture. No bread, dry cake, rice, cheese cubes, corn or peas.

• Meats should not exceed a ¼ inch cube, moistened with gravy or sauce. • Allows canned fruit (except pineapple) cooked fruit or fresh banana. Avoid

skins, dry fruit, coconut, and seeds. • Allows scrambled, poached, or soft cooked eggs. • Cooked vegetables should be less than ½ inch and fork mashable.

Dysphagia Advanced (NDD Level 3) This level consists of food of nearly regular textures with the exception of very hard, sticky, or crunchy foods. Allows bread, rice, moist cakes, shredded lettuce, and tender moist whole meats. Avoids hard fruit and vegetables, corn skins, nuts, and seeds. Liquid Consistency Spoon thick Honey-like Nectar-like Thin: includes all beverages. The following are considered thin liquids: water, ice, milk, milkshakes, juices, coffee, tea, sodas, and carbonated beverages. Source: National Dysphagia Diet: Standardization for Optimal Care (2002)

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